I Attended HealtheVoices18 and I’m Still Amazed

I applied to HealtheVoices18 by making a video answering a few questions on why I would be a good fit; I have the video saved and I still can’t believe they picked ME! This was their fourth year of holding the HealtheVoices Conference, where they bring all kinds of patient advocates together by “Growing Stronger Together”.

I had to talk to all my doctors to make sure I was okay to travel, per my family. My doctors all agreed it would be fine for me to travel. Janssen had everything thought of in advance for the attendees, blankets, ice packs, couches, comfy chairs and we had been informed where there were pharmacies, urgent care and nearby hospitals. I explained to my husband that I would have a wheelchair set up upon my arrival in both directions to help me in the airport since I’d be travelling alone. I explained that he could go as my companion caregiver. He thought he’d be bored but now I know he would have loved it, meeting other caregivers and seeing the amazing speakers.

There were several things I needed to take care of before I went away for four days. I wanted to travel carry-on luggage only, I needed some clothes because I’ve lost so much weight that even my newer clothes were too big. I wasn’t sure I’d be able to accomplish a carry-on only but I did it! I bought three t-shirts, two pairs of jeans, a pair of jean shorts and an anorak jacket. I lost my jacket in our flood so I wanted to make sure I found one that I loved. The dress for the conference was to be comfortable.

HealtheVoices took care of everything! I was able to pick when I wanted to fly to Chicago and then what time I wanted to fly back home. I arranged with the airline a wheelchair through the airport and when I arrived in Chicago and there was a porter waiting as I got off the plane. Because I was carry-on only, we went to the meetup location, I spotted the HealtheVoices sign. I was then ushered into a car. I felt like a celebrity sitting in the back of the car being driven to the hotel all alone. The hotel was a 40-minute drive from O’Hare airport, check in was a breeze and my room request of a high floor was awesome. The view of the Chicago River was beautiful as was the hotel room.

I went to registration and received my welcome package. I went down to the restaurant and got myself some lunch and a glass of wine. I had received an email that there would be a Canadian meet up at 7 pm down in the bar. The Canadian meetup was a great way for the Canadian’s to get to know each other. This, the fourth HealtheVoices Conference, had the most Canadians ever. Most years there were only two Canadian attendees. This year we were eight strong. I never even thought to get a group photo because I was in awe of all the amazing advocates and the wide-ranging health issues we advocate for.

The actual conference was Friday, Saturday and Sunday, check out the agenda here. There were even various seating options during the sessions with sofas and side chairs and they came in handy. They had a wide variety of food for all of the meals and it was all yummy. I’m amazed at how everything had been thought of for the Patient Advocate attendees from snacks, drinks, blankets, a quiet room, a social room, heating pads, and ice packs. Sending a great big thanks to the Janssen team at the conference. On Friday, I started to get dizzy and was super nauseous. The Janssen team members recognized that I wasn’t right, they brought me into the quiet room and took care of me. I was able to get some food and ginger ale into my body and join in on the afternoon sessions. Thank you Janssen Team! You are amazing.

Sadly, the only thing I missed was the open mic night. I went to my room and went to bed early. Having the Patient Advocates involved in the whole weekend, talking, advocating, meeting fellow chronic illness warriors and others with completely different diseases was the right amount of balance. I met so many amazing people who I bonded with, some had my illnesses and others did not. One thing we all have in common is our mental health. It’s common across all illnesses and it’s something that we all need to keep vigilant of. The theme was, “Growing Stronger Together”. I know I came away feeling stronger, a sense of togetherness with my new friends and I feel I’ve grown as a Patient Advocate. I learned so much over the weekend and I’m so inspired by everyone and everything I learned. I spoke out loud about my depression, anxiety and suicide attempt. I also posted videos on my social media for the first time that weekend. This is the first real blog I’ve felt like writing because I’d been so wrapped up in everything that my illnesses brought to my life. I wasn’t living and feel like I found my way back to who I really am. and I am more than my illnesses!.

I’m so thankful that Janssen picked me to attend HealtheVoices18. Thank you for all the swag from the conference sponsors. The most important part of the weekend was meeting friends, making new friends and knowing I’m not alone on my journey that we’d already Grown Stronger Together!

Feeling Some Hope

I wonder when my life became a revolving door of doctor’s appointments, nausea, fatigue, chronic pain, migraines, and the list goes on. I spend my time managing my life around my illnesses. I have a no more than one doctor appointment in one day due to the crappy chairs in the waiting rooms that cause more pain, doctors falling behind because it always happens. I have a few doctors that I get in right around my appointment time.

I’ve had to have a few doubled up appointments because my Pain Care doctor wants to have me try Low-dose naltrexone or LDN. I’m a good candidate but it entails having all my doctors aware and on board so that we can work quickly if any complications arise. What is LDN? Well, the short answer is it’s a smaller dose from .05 to 4.5 mg compared to the 50 mg dosages that are given to persons going through opioid withdrawal. The LDN is what’s called off-label because they’re still doing studies on it. Yes, I feel like I’m part of a study, I’m not but the process has been hard fought.

What is low-dose naltrexone and why is it important?

Low-dose naltrexone holds great promise for the millions of people worldwide with autoimmune diseases or central nervous system disorders or who face a deadly cancer.

My conditions of Lupus, Depression, Hashimoto’s, Fibromyalgia, are just a few of the conditions that LDN can help. I’ve also read that it can help with migraines. I’ve lost three years of my life so far to the storm that my body has gone through. I’m currently seeing a General Practioner monthly, my Pain Care Doctor (anesthesiologist) weekly for therapeutic nerve injections, Psychologist and Psychiatrist both vary between every 4-6 weeks (it was at every two weeks), my Rheumatologist, I see quarterly now but I can call if I need to see her sooner and then last but not least is my Endocrinologist who I see twice a year but I went in to see him three months early so that we could get this LDN started. I also supplement my doctors with massage, chiropractic and essential oils.

My Endocrinologist has applied for a FreeStyle Libre Glucose Monitoring system. The fears are that I’ll end up in more hypoglycemic episodes in addition to the high sugars. I think it’s a product that I’ll love. So please cross your fingers that I get approved for this device.

In between all these doctors appointments, I try to keep up with something in the house be it dishes, folding laundry, sweeping up dog hair on top of my chronic pain, nausea and almost always present migraine. My daughter has gotten me to the actual cinema a couple times and the new lazyboy recliners are any spoonies friend for a three-hour movie.

I’ve been more “lupusy” of late, I basically fell asleep on Thanksgiving at the table and then slept for two more days. For me, the lupusy feeling is more achy joints, constant headache, more nausea (is that possible?), itchy and low-grade fevers, basically the feeling like having the flu but it doesn’t ever go away.

This week on deck, my shots aren’t until Thursday and I have a 2nd Dr appointment that day. I have only one other this week so I’m feeling like it’s a slow week. I have a pile of lab work to get done but the majority of the vampires are on strike and the couple times I’ve gone to the other labs, they closed really early because well everyone needs bloodwork.

I had a good day with my daughter

I feel like this blog post was so technical but for me, it’s exciting that all my doctors are on the same page, I may be on the LDN soon. Now back to the regularly scheduled chaos of getting our house back to pre-flood, my daughter and her friend painted the first coat in the family room and it looks good.

After The Storm

Somewhere, in my memory box is a poem called After The Storm that I wrote. I haven’t found that box and hope it survived our flood. It also makes me think of the poem, After a While by Veronica A. Shoffstall and the blog I wrote featuring it titled: Hopeful.

What does this have to do with After the Storm? Well, I will find the poem but the storm for me has been my health but more recently we experienced a catastrophic rainstorm. We had almost seven inches of rain in less than three hours. As a result of this storm, we flooded, in our yard and then in the house. We also got rain from the roof that leaked as a result of the catastrophic windstorm in March. (that’s another rant)

Photo from the Windsor Star – link on photoWhat the Ditch/Drain is like normally

We have this check valve or back up valve that is installed so we don’t get water. Well, the valve failed. At first, the water was just in the yard, on the street but then it came rushing up the drain in the floor. When we moved into this house, it was covered with tinfoil. The only water we’d had in 22 years was when the hose broke on our washer when we were out at a birthday party. We have a wet/dry vacuum but it would fill in seconds but our son brought home a sump pump, then our son went to my grams to get her spare sump pump. We had two pumps going in the basement and we were able to keep it to about 3-4 inches when our neighbours had a foot to a foot and a half of water. On top of all this, we were getting leaks in the bathroom and kitchen. The kitchen isn’t so bad but the bathroom is another story. Our insurance company, Allstate, has been great. Our basement is covered to our maximum allowed and because we did so much of the hauling of the wet and severely smelly carpet, boxes and clothes out to a bin we ordered, we will not have to pay the deductible. The roof that was supposed to be replaced after March is now going back to the insurance company to reassess the damage because it now includes water damage that shouldn’t have been there. We are waiting on that. After the storm, we already have the cheque from Allstate and can start to put this part of our life back together.

I’m also working on my health. My health storm isn’t over but I’m choosing to find the balance. I’ve become a doTerra Wellness Advocate to save money on essential oils for my personal use but it’s become so much more to me. I can look in every room of the house that and see doterra products, be it oils to shampoo, to soap to a diffuser or two. Slowly, I’m adding more and more natural, healthy for me items into my life. I’m excited about doterra and the direction it’s heading for me. I have my now too small box of oils, a larger one is on my Amazon wishlist! I have doterra products all over the house now, hand cream that is not greasy, soap and shampoo in the shower. I plan on making my own bath bombs because the store bought ones are just too strong for me. I have lemon and wild orange on my window sill for adding to water.

I’m still getting nerve block shots in my head, neck, back and SI joints weekly. The hope is to be able to go every two weeks soon. I have scheduled the appointment to see my Endocrinologist so that we can all work to trying the LDN. I have every doctor on my team visits in the next two weeks, after trying to only schedule two per week. It is actually exhausting getting ready, getting there on time only to wait for long periods of time. I have been really out of sorts and finally figured out that I was doubling my iron pills and not taking my antidepressant. Yeah, that was a really stupid thing. Lesson learned, look at the actual label before filling up your Pill Drill for the week. Our new mattress set will be delivered on Friday, so we are hoping for a great night’s sleep.